A person with dementia, for example Alzheimer’s disease, is still a person. One of the most heart-breaking effects of dementia is the perceived loss of self. If we lose memories and forget names, those around us may think we have lost ourselves. However, we are more than just our factual memories – we are who we are because of all the things we have experienced in our lives and the emotions we have felt.
It is important that the people who care for a person with dementia know as much as possible about that person’s life, to be able to understand behavior that at first glance seems to be meaningless. Too often people with dementia who live in a residential care facility are viewed only as they are in the present. Because they may not remember where they live, who their family members are and because their carers do not know anything about their lives, they risk sinking further into isolation. While their physical needs may be taken care of with kindness and affection, with no knowledge of their past life, their carers may struggle to connect with them mentally.
My daughter Natalie works for Alzheimer’s Society in the UK and, at a meeting with care home managers in the North East of England, learned the most wonderful anecdote that illustrates this perfectly:
One of the managers told her the story of Mavis, an 87 year-old resident with Alzheimer’s who was completely enclosed in her own world. In the care home where she lived she was not very popular – she would spend the whole day tapping with her fingernails on any available surface. Tap, tap, tap. Tap, tap, tap. As you can imagine, it drove everybody crazy and nobody could understand why she did it. Tap, tap, tap.
One day, out of the blue, her young niece came to visit her from Australia. How exciting! Of course, the first question the care home staff asked her was “WHY does she do this?!” Unfortunately, the niece did not know – such a disappointment…
Nevertheless, the staff decided to spend some time chatting to Mavis’ niece to find out more about their resident’s past life. It is a sad reality that staff in care homes will often comment that they learned more about their residents at their funerals than in the years they cared for them. They were determined not to let this happen this time.
As they chatted, the conversation inevitably turned to the War – did the niece know what Mavis had done during the Second World War? “Oh yes!” said the niece “I remember my mum telling me that Aunt Mavis had worked at Bletchley Park and helped to crack the Enigma code!”
Nobody could believe it. This annoying lady who tapped, tapped, tapped all day long had worked in a top secret facility as a code breaker!?
Suddenly they started to really listen to Mavis’ tapping. Maybe it wasn’t random tap, tap, tap after all… Maybe it was dot, dot, dash? Morse code!
Mavis only lived for three more months but, in that time, she became a local heroine! The staff and her fellow residents looked at her with new-found respect, all the local papers wanted to come talk to her and, to her delight, the local Boy Scouts started taking it in turns to come and converse with her in Morse code.
Stories like this one are the reason why we must not forget that people with dementia are still there, as are many of the things that make them who they are.
There is more to the person than the dementia.
For an explanation of how dementia affects our memory please see this short video